A Mother’s Thoughts From The Road

My parents love coming out to Kansas City to visit me. They get a small, much deserved vacation, they get to shop at all of the quaint, artisan shops in downtown Lawrence that they enjoy, and of course they get to see their oldest son. The three of us always have a great time together, them catching me up on their lives and other family news from back home, and me filling them in on my latest Roll Models ideas, kitchen adventures, and all of the other crazy experiences that make up my life. I usually cook something special for them one day, and they treat me to one of my favorite restaurants another. These long weekend trips are pretty much perfect, that is until their stay is over and they have to travel home.

My parents always struggle with saying their goodbyes at the end their visits.

Everything is always going well until it comes time for them to head back to Indiana and for us to say our goodbyes. My father, who is a man of few words, typically leaves me with some wisdom, a handshake, and then quickly walks away, but even without his rapid departure to avoid any possible waterworks, I can always see in his face that it is hard for him to say farewell. My mother is much more emotional, and is often fighting back tears before we even make eye contact. She feels very melancholy and almost guilty, that she is “abandoning” her physically disabled son, who she cared for every day for 18 years, and leaving him over 600 miles from his family. It is always a difficult goodbye with tears and a long hug. She gives me a kiss, says “I love you,” and slowly walks out my front door. It is always hard for me to watch my parents, who I love so much and owe so much to, leave me in such a depressing, heavy-hearted state.

Even though I could always understand on some level why it is so heart-wrenchingly difficult for my parents to say farewell, it was always something that I could never fully wrap my head around. I could grasp the concept of leaving one of their children, especially a disabled one, so far from family. This made sense to me, but what I struggled to understand was why it was not nearly so emotional and difficult for them to say goodbye to my siblings, who were in very similar situations. This last Thanksgiving though, my mom did something that helped me greatly in fully comprehending her tear-filled farewells. After having hosted a wonderful, food and football filled weekend with my parents and brother, I got on my tablet to respond to all of the emails and such that I had ignored over the last three days. By the time I had sifted through the myriad of emails that had accumulated and replied to the handful that were important, I saw that my mother had sent me an email while they were driving home. Her thoughts from the road, which I have included below, are very emotional for me to read, but they are also enlightening in that they give you a glimpse into her thoughts and feelings about my disability and our relationship. I hope you get as much from her sincere and honest depiction of her feelings as I did. If nothing else, please take her closing words to heart, as she succinctly and effectively gives you the formula for a happy life.

(My mother’s words are in italics)

My mom was my primary caregiver for the first 18 years of my life, which created a strong connection between us.

Traveling on Thanksgiving to be with family is as much a part of the holiday’s framework as is the turkey and pumpkin pie. Our family, over the years, has been lucky that the travels haven’t been very far. When Scott and Ryan went out to Kansas we decided to celebrate Thanksgiving there and our travels became longer and Thanksgiving more intimate with only our immediate family.

The first few years it was an adventure to Lawrence, Kansas, where Scott was in graduate school and Ryan attended undergrad for a year to assist Scott in his move to becoming independent and getting established in Kansas. Dan, Stephanie and I would travel Wednesday afternoon and evening to arrive on “Turkey Day.” We would go out for Thanksgiving brunch at a hotel in downtown Lawrence and then back to Scott’s for football and snacks. We would stay on Friday and wander through the wonderful downtown shops of Lawrence, Kansas, to begin our Christmas shopping.

A few years ago Ryan was back in Indiana at Indiana University, and Stephanie was working and going to school in New York City. Steph could not travel that year, so Dan and I picked Ryan up at IU and headed to Kansas for Thanksgiving. Our plan was to cook our Thanksgiving dinner at Scott’s apartment that year. Dinner went well, but Scott got quiet after eating and wanted to lie down. His temperature rose, he became nauseous, and in the blink of an eye we were heading to the hospital.

We ended up with Scott being admitted to the hospital. He was dehydrated, feverish, nauseous, achy, and had a headache. Doctors didn’t know where the infection was coming from, but it was there and didn’t want to go away. So IV fluids and antibiotics were given with adjustments being made every 8 to 12 hours and still no sign of progress. Ryan, Dan and I took turns staying with him. Hospital staff can deal with illness, but the intricacies of SMA, and all that goes with it, are beyond their immediate scope of care, so family cares for Scott while nurses, doctors, and medical tech deal with the immediate threat.We were there several days. Ryan and Dan were told not to leave to go back to Indiana, and Steph was on stand-by to travel to us. It was touch and go.

My mom’s maternal instincts make it hard for her to leave her disabled child 600 miles away from family.

Hours in a hospital are very long, with too much time to think, pray, plead, worry, and feel helpless. A couple more days pass and miraculously Scott’s body began to win against the infection. Dan and Ryan return to work and school, while I stay behind until Scott is released and home doing well. I send lesson plans by mail and phone (I was a choral director with concerts and community performances looming throughout December, but my colleagues and principals back in Indiana were wonderful, and everyone kept my work life going so I could be with my son).

I traveled home about 10 days after Thanksgiving by Amtrak, not wanting to leave my son but no longer needed. I had a husband and job to return to, but did not have any way to explain how emotionally numb I had become. Empty inside, but on the outside I smile, get through concerts and performances, watch my healthy students sing and dance and live their lives, all the while wishing my son could live a mostly carefree life also.

Scott is strong. He fights and puts on that same strong face for the world and teaches us all, every day, to make the most out of your life and deal with what you are given. I love and admire my son, and I am so thankful I have him to love and to teach me what is important.

Thanksgiving 2014 was at Scott’s this year again and although Steph couldn’t be with us, we had wonderful family time. We cooked, watched football, put up Scott’s tree, and watched Christmas movies. Normal and good…but deep in my heart I still fear the illness and how quickly it can change our lives.

Love and treasure family and friends, spend time laughing and talking, appreciating each small moment.